Glen Campbell's wife to other Alzheimer's caregivers: You are not alone

Country music legend Glen Campbell revealed that he has Alzheimer's nearly six years ago. Now, as he is in the final stages of the disease, his wife of 34 years, Kim, is crossing the country sharing the story of her experiences as a caregiver.(Photo: Larry McCormack / The Tennessean)

Kim Campbell patiently turned her husband around and began her task again. It was just one of so many to be done.

That's the life of a caregiver.

Doctors in 2011 diagnosed Glen Campbell — the country music legend who has sold more than 50 million albums with hits such as Wichita Lineman, Galveston and his signature Rhinestone Cowboy. As the disease has progressed, Kim, his wife of 34 years, has been by his side.

Family photos sit on the piano inside country music legend Glen Campbell's Nashville home.(Photo: Larry McCormack / The Tennessean)

There's a song on Glen's album Ghost on the Canvas. It begins with the words: "I know a place between life and death for you and me."

"That's kind of where you feel like you are living when you are living with Alzheimer's," Kim says.

The signs appeared as early as 2009. Occasional memory lapses. Mild cognitive impairment, doctors said.

Sometimes it turns into Alzheimer’s, and sometimes it doesn’t: “So just bring him back every year, and let’s keep a watch on it and see what happens."

At the time, Glen, was touring and Kim was in school for interior design at UCLA. They lived in Malibu, just enjoying life. But inside Kim was panicking.

Glen began repeating himself a lot, asking the same questions over and over. And he became compulsive about mundane tasks

Their cars had to be parked just right, at the perfect angle. And the washcloths had to be hung up just so. Glen wanted everything out on the bathroom counters, nothing in drawers.

Glen Campbell's wife, Kim, aims to encourage other caregivers. "I want to let people know that there’s hope out there, there’s help out there, they don’t have to do this alone," she says. "They can’t do it alone. It will take you down."(Photo: Larry McCormack / The Tennessean)

He also began to shadow Kim everywhere she went. If she went into the kitchen, he followed. If she walked through the living room, so did he. If she got into the shower, he got in with her.

“So, it wasn’t all bad,” she says with a chuckle.

At one point, she wanted to see how far it would go. She went outside and walked around the pool in the backyard. She circled it about 15 times.

"He just followed behind as content and happy as he could be, never once asking, 'What are you doing?' " Kim says.

“He just wanted to be with me every single minute."

That desire, at times, was smothering and irritating. His forgetfulness became an impairment to conversation. And even with Glen constantly by her side, Kim began to feel a sense of loneliness because their conversation was so stale.

When he started not being able to find his way home from the golf course — a 10-minute drive he had made for years — Kim knew something was really wrong.

In 2011, the couple went back to the doctor and repeated the same memory tests from years before. That’s when doctors used “the A word."

Her first question was: “Is it fatal?” The answer was yes. Generally, people with Alzheimer’s live two to eight years after diagnosis.

“That was terrifying,” Kim says.

But with fear came another feeling.

"Once I knew that he had Alzheimer’s everything started making sense," Kim says. “And that fills you with compassion when you can understand it.

“From the time that I understood, I was there for him every single second.”

Country music legend Glen Campbell revealed that he has Alzheimer's nearly six years ago. Now, as he is in the final stages of his disease, his wife of 34 years, Kim, is sharing the story of her experiences as a caregiver.(Photo: Larry McCormack / The Tennessean)

Many of those seconds, though, were draining.

Shortly after the diagnosis, Glen went on his final tour. There were concerns, at times. Just before an appearance on Conan O'Brien's show at the end of 2011, he looked around and said: "What song are we playing?" He had rehearsed two songs for the show earlier that afternoon.

"We didn't know if he would even go on," Kim says. "But when they called his name, he played it just like they practiced."

He also fired the band three times on his final tour stop in Napa in 2012, Kim says. Each time, he forgot a little while later why he had fired them.

In the early stages of Alzheimer's, most can function fairly well and continue to do what they love. In the middle stages, they can usually live at home, although they need support and supervision. In the final stages, someone needs to be with them all the time.

About the time of the diagnosis, Glen and Kim moved to Nashville to be nearer their son and daughter, who had jobs in Music City as singer-songwriters. Here, they gained a support system, not only from family — including Glen's in Arkansas — but also from the music community.

Still, for Kim, daily care became 24-hour care.

“People don’t understand that Alzheimer’s is not just about losing your short-term memory and then your long-term memory. But you can become paranoid, suspicious, violent.”

Kim Campbell

"People don’t understand that Alzheimer’s is not just about losing your short-term memory and then your long-term memory," Kim says. "But you can become paranoid, suspicious, violent.

"They just lose their ability to think or reason. They can wander off and not know where they are going or why they are motivated to leave the premises."

When Kim went to sleep, she would put something in front of the bedroom door because she wouldn’t want Glen to get up and leave the house in the middle of the night. They had alarm systems and a fenced property. Still, she put coat hangers on the doorknob so they would rattle if he got up. She didn’t want him to fall down the stairs.

She also couldn’t bathe him without a fight.

"It just takes over your life," Kim says. "They are losing their identity, because they can’t remember who they are, but as a caregiver you are losing your identity.

More than 15 million Americans provide unpaid care, such as physical, emotional and financial support, for the estimated 5.5 million Americans living with Alzheimer’s disease, according to findings from the 2017 Alzheimer’s Disease Facts and Figures report released by the Alzheimer's Association.

Depression and anxiety are more common among dementia caregivers than among people providing care for individuals with certain other conditions, the report said. "There are a lot of hurting people out there," Kim says.

Eventually, it became clear to Kim she needed more help. In March 2014, she chose long-term care for her husband at a memory care community near their home in Nashville. The decision challenged her; there was a stigma to it. But, "You can't do it all by yourself," Kim says. "So don't be a martyr."

It was a decision she believed her husband would support. He had always been so open with his story. When she thought others would turn away, the opposite happened. He played to sold-out crowds across the country. Glen and his family shared his journey through the earliest stages of Alzheimer's in the 2014 documentary Glen Campbell: I'll Be Me. From that came the Grammy-winning and Oscar-nominated song I'm Not Gonna Miss You.

From left, Neil Perry, James Keach, Kimberly Perry, Scoot Borchetta, Trevor Albert and Reid Perry are seen at the "Glen Campbell ... I'll Be Me" premiere at Music City Center on Sunday in Nashville. Jae S. Lee / The Tennessean

Members of The Band Perry, Neil Perry, Kimberly Perry and Reid Perry, are pictured during the "Glen Campbell ... I'll Be Me" premiere at Music City Center on Sunday in Nashville. Jae S. Lee / The Tennessean

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"Glen thought that was probably the most important thing he could ever do," Kim says. "And I think he’s right."

Glen's family members have become strong advocates for Alzheimer's awareness and research, using the film to get the message out and comfort other families dealing with the devastating illness. Kim now tours the nation sharing her personal journey as a caregiver to Glen.

So much of it has been hard, but the only way to help others is to speak about it openly and offer support through shared experiences and stories.

"Rather than cursing the darkness," Kim says. "I want to light a light."

For her part, Kim also is determined not to be the second victim of this disease. She suffers from depression, as many caregivers do, but she works to stay healthy. She takes dance class three times a week at Nashville Ballet. She goes to the YMCA and takes Zumba and cardio classes.

Glen Campbell thanks the crowd after accepting his Male Vocalist of the Year award from presenter Tammy Wynette at the second annual CMA Awards show on Nov. 18, 1968, at the Ryman Auditorium. Bill Preston / The Tennessean

Glen Campbell, right, gets a little push from presenter Jimmy Dean after accepting his Entertainer of the Year award at the second annual CMA Awards show on Nov. 18, 1968, at the Ryman Auditorium. Campbell also won the Male Vocalist of the Year award. Bill Preston / The Tennessean

Glen Campbell, right, thanks the crowd after accepting his Entertainer of the Year award from presenter Jimmy Dean at the second annual CMA Awards show Nov. 18, 1968, at the Ryman Auditorium. Bill Preston / The Tennessean

Entertainer Glen Campbell lines up a putt on the 16th green as he shoots 75 in his first trip around the new Crockett Springs National Golf and Country Club on July 26, 1972. Campbell is a founder of the club. Jimmy Ellis / The Tennessean

Singer and TV star Glen Campbell, center, and his wife, right, walk through the Metro Airport after arriving in town Oct. 13, 1972, for the Music City USA Pro-Celebrity Golf Tournament. Frank Empson / The Tennessean

Host Glen Campbell, center, checks on presenters Bobby Goldsboro, left, and Lynn Anderson as they set up to present the Vocal Duo of the Year award during the sixth annual CMA Awards show Oct. 16, 1972. Frank Empson / The Tennessean

Former Louisiana Gov. Jimmie Davis, right, speaks to a packed house after becoming the newest addition to the Country Music Hall of Fame during the CMA Awards show Oct. 16, 1972. Looking on is host Glen Campbell. Frank Empson / The Tennessean

Guest Glen Campbell, second from left, and host Bobby Bare, right, get ready to tape a session during the "Bobby Bare & Friends" show March 21, 1984, at Bullet studio on Music Row. Dan Loftin / The Tennessean

Host Bobby Bare, left, has Glen Campbell and Jimmy Webb together at the piano during a taping of the "Bobby Bare & Friends" show March 21, 1984, at Bullet studio on Music Row. Dan Loftin / The Tennessean

Host Bobby Bare, left, has Glen Campbell, right, and Jimmy Webb together at the piano during a taping of the "Bobby Bare & Friends" show March 21, 1984, at Bullet studio on Music Row. Webb was responsible for Campbell's earliest hit songs. Dan Loftin / The Tennessean

Country legend Glen Campbell performs "You'll Never Walk Alone" during the Broadway Meets Country event Nov. 12, 2005, at the Fredrick P. Rose Hall, Home of Jazz at Lincoln Center in New York City. Sanford Myers / The Tennessean

New Yorker Tom Mulligan, left, is thrilled to have his photo taken with Glen Campbell while both were attending the reception at the New York mayoral residence Gracie Mansion on Nov. 14, 2005. Larry McCormack / The Tennessean

Fans line the steps outside the Country Music Hall of Fame and Museum and applaud as Glen Campbell arrives May 7, 2006, for the Medallion Ceremony, in which he was officially recognized as a Hall of Fame member. John Partipilo / The Tennessean

Brenda Lee, who was inducted into the Country Music Hall of Fame in 1997, congratulates Glen Campbell, who received his Hall of Fame medallion in a ceremony May 7, 2006. John Partipilo / The Tennessean

Glen Campbell, center, picks his guitar during the end of a tribute to him at the 45th CMA Awards show Nov. 9, 2011, at Bridgestone Arena. Looking on are Brad Paisley; Campbell's wife, Kim; and Vince Gill. Sanford Myers / The Tennessean

Glen Campbell, left, and his daughter, Ashley, play "Dueling Banjos" during his concert Nov. 30, 2011, at Ryman Auditorium. His children, also known as the group Instant People, are his touring band. Jeanne Reasonover / The Tennessean

Glen Campbell, left, and his daughter, Ashley, play "Dueling Banjos" during his concert Nov. 30, 2011, at Ryman Auditorium. His children, also known as the group Instant People, are his touring band. Jeanne Reasonover / The Tennesse

Glen Campbell, second from left, and his wife, Kim, left, pose with General Manager Sally Williams and Merle Haggard backstage at the Ryman Auditorium on April 9, 2012. Samuel M. Simpkins/The Tennessea

Glen Campbell, second from right, with his son, Cal, left, wife, Kim, and daughter, Ashley, walk the red carpet before the CMT Music Awards show June 6, 2012, at Bridgestone Arena. Samuel M. Simpkins/The Tennessean

She eats healthy and says yes to social invites with friends. She prays. She works on her blog, Careliving.org, which offers uplifting, inspiring and informative stories meant to encourage caregivers to take care of themselves so they don’t become victims of the disease.

"I want to let people know that there’s hope out there, there’s help out there, they don’t have to do this alone," Kim says. "They can’t do it alone. It will take you down."

Kim also makes sure her husband is not alone. She visits Glen every day, with few exceptions.

Right now, Glen is in the late stages of his Alzheimer's. He has aphasia, so he's lost most of his language. He doesn't understand much. Occasionally, he can say a short sentence — an automatic response like "I love you" or "How are you doing?" The words don't register meaning in his head.

"But he still has his essence," Kim says.

There are times when he still tries to tell jokes. It's often gibberish, but it still makes Kim laugh. Occasionally, he will break into an air guitar — though he doesn't play a real one anymore. Other times, he tries to sing.

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Glen Campbell’s last record, “Adios," was “therapeutic” for the legendary country singer who is suffering from Alzheimer’s disease, said his daughter Ashley Campbell. The singer recorded the album after his diagnosis in 2011, and is now in the late stages of the disease, living in a memory care facility in Nashville, Tennessee. (June 15)
AP

When his daughter Ashley visits, she brings her guitar to play for him.

He sits in his rocking chair as she strums Emmylou Harris or Johnny Cash. You Are My Sunshine seems to be one of his favorites.

He closes his eyes and taps his foot. He likes the rhythm, Ashley says. How the sounds feel.